14 Mar - Headed Home

Sarah's being released from the hospital today - she's definitely feeling better than before so the ERCP has helped. Her blood test this morning still showed bilirubin hovering above 4 but we're hoping that was due to the fact that she got an infusion of blood yesterday and it is still possible it could drop below 3 later this week. The plan is still to start chemo on Thursday, at whatever dosage her liver allows - that's our most important next step for Sarah.

13 Mar - Promising Trend

Looks like the ERCP really helped Sarah's liver. Her first blood test this morning after yesterdays procedure showed a promising trend: bilirubin is down to 4.2 and the other liver function numbers have also improved. Sarah is feeling better this morning and she'll be able to come back home after receiving a unit of blood to boost up her counts and also a CT scan of her liver and surrounding abdominal area. Based on the ultrasound, we expect to see quite a few large tumors but at least we'll know what we're dealing with. If bilirubin gets down below 3 by her next blood test on Tuesday, then we hope to get Sarah started on Taxol this coming Thursday.

Still very worried but this is a good first step in the coming fight and has bought us some breathing room.

12 Mar - ERCP Went Well

Sarah's ERCP procedure went as well as we could have hoped today. Apparently she has an unusually narrow bile duct (go figure). The doc pulled her old stent out, which was on the small side to match her bile duct, and it was in fact plugged up. He was able to place a significantly wider stent so we're hoping that she'll have much better flow which translates into improved liver function levels and a bilirubin level below 3 (it's 8.6 right now which is super high - normal high limit is 1). Sarah's feeling fairly good and is just recovering from the narcotics. She's even hungry and was hoping to get in a good dinner but her doc ordered full liquid diet only.
So now we'll have to wait for a few days and see what her bilirubin level does - that will determine what we do next. The gastro doc that did her procedure did see indication of the liver tumors pressing on some of the biliary duct tree in the liver and he also saw some likely tumor tissue in the head of the pancreas where the bile duct passes through. We're hoping that Taxol treatments can beat those back and shrink them.

11 Mar - Big Day Tomorrow

Update on Sarah - we went to see her onc today. She felt really weak and could barely walk. Her blood "thinness" was off the charts high (ie thin) because the liver normally produces blood coagulants and apparently has not been doing that. So, we spent all day getting her re-hydrated and pumped up with blood plasma to get her blood back into the normal range - required in order to have the ERCP tomorrow to replace her stent and inspect the bile duct system. The plan will be to get her on chemo asap with as high a dose as her liver will tolerate. There's only one chemo drug that stresses the liver the least and has shown some effectiveness for Sarah and that's Taxol. On the bright side, Sarah perked up significantly after all the fluids and had a spring to her step on the way out of the clinic today.

So the big day is tomorrow (Friday) - the status of her bile duct and our hope to bring her Biliruben level down will determine how much chemo she can get in order to fight the advance of her liver tumors.

Today also marked a very tough event for us -- we sat the kids down and used the d-word ("die"). We both felt it was time to bring Ben and Sam fully into the loop on the fact that Mommy might not get better this time. They seemed shocked (there were tears) but also a little relieved that we finally shared this with them. With all the new anxiety in the air and the way Sarah looks/feels, I know they had a sense that something new was going on. It was also important for them to feel informed and be reassured that we were doing everything we could and that they would be cared for no matter what. And that it was ok to talk about their fears and share their feelings with us.

Thank you so much to everyone that has reached out to us through emails, visits and calls. Although I haven't been able to respond to everyone yet, the overwhelming show of concern has touched us both deeply and comforted us.

10 Mar - Alarm Bells

We received the results of Sarah's liver ultrasound and they were very alarming: multiple tumors with the largest at 6cm. That's huge - Sarah's onc told us a while ago that 6cm is around the size where tumors develop internal "pressure" and often stop responding to systemic treatment. So even if we can get Sarah back on treatment, that larger tumor will still likely be a problem.

This week and next will be dedicated to pushing Sarah's doctors for all options available to get the situation under control. Friday she'll get another ERCP where her gastro will see if he can clear a path in her bile duct system to drain the liver of toxins that are building up there. If he is successful then at least we have a chance to get her back on treatment.

Sigh... emotions are running high right now. I waver between a firm resolve to be hopeful and the realization that Sarah's life is in serious jeopardy. I'm returning from a trip and the people sitting next to me on the plane probably think I'm crazy (not that I care right now) because I periodically have tears in my eyes as I think about this. Hard to think about anything else...

9 March - Liver Tumors Are Back

Sarah took a turn for the over the past few weeks - instead of the "not feeling good" feeling getting better, it got worse. She's spending most of the day just laying on the couch and trying not to do much. Fatigue and lack of appetite are her primary symptoms but she just got updated test results and liver function tests are all worse plus her tumor markers have risen to a new high of just under 300 for CA27-29. And this morning her doc called with the abdominal ultrasound results and there are definitely tumors back in her liver. She's got an appointment with the gastroenterologist to see if there's some way he can drain her liver so her numbers improve. Otherwise she will not be able to take any chemo or other systemic drugs to control tumor growth.
We're in a pretty tight spot now all of a sudden. Basically her liver is gradually failing and we can't treat her unless the situation in her liver can be controlled somehow. We're going to be having some very important conversations with her doctors over the next two weeks.

25 Feb - Update on Sarah

Sarah has had a pretty rough time recently and is still struggling with fatigue, intermittent nausea and low appetite. She's hanging in there but is really tired of not "feeling right." This past weekend we think she caught a stomach bug and because she couldn't keep food or more importantly her tablets down, we had to take her in to the hospital for IV fluids + medicine. She felt better the next day and ended up spending just two nights in the hospital. Her liver function numbers are currently high out of spec and her tumor markers are the highest they have ever been, although we have good reason to believe they are coming back down due to the Tykerb treatments (we expect to get new numbers next week). And, Sarah is about half way through her pituitary radiation treatment, which is probably contributing to her fatigue.

The toughest thing for Sarah right now is the feeling that she might not ever "feel right" again since we really don't know exactly what's causing the general unwell feeling. We just learned today that her endocrine levels are ok - we had assumed the problem was there and that relief was in sight by adjusting the endocrine drug levels. Now we need to reconsider what to push for next. Maybe a liver and pancreas MRI. Sigh...

21 Feb - The Winter Campout

Sam was thrilled to go on this first Winter camp-out! You can see him in the green jacket with his legs in the air, goofing off after sledding down a hill. Ben also had a great time and he and I got a special "Haylushka" qualification after doing many tasks and a nature project. The weather was great - we spent almost all of our time outside of the cabins playing in the snow and running around the camp grounds. There was a great toboggan run and you can see Ben (orange hat) on a sled together with his friends zooming down the chute.

Who Dat Fever - Go Saints!

The Lopez family just before watching the Superbowl. Serious Who Dat fever gripped our living room when the Saints won! Sarah was so stoked - what a game and what an experience to see it really happen.

5 Feb

Sarah is more or less recovered from the surgery now but still often feels worn out and exhausted. She starts radiation next Monday which will go all weekdays for 3 weeks. For her systemic treatment, recent studies have shown Tykerb + Herceptin to be effective in halting and even reversing tumor growth, so her onc wants to try that for 4 weeks and then see whether it is working for Sarah. If not, then she'll start chemo at that point. The Tykerb seems to be tolerable at this point, so it's a relief that the side effects aren't too bad. That can still change if she has to take a higher dose, though.

So, for now we just have to press on and wait until next month to see if this treatment is effective or not. That'll also be the time to re-evaluate Sarah's pituitary function - March will be a busy month...

24 Jan Update

Sarah continues to feel better bit by bit. We met with her oncologist and radiation onc last week. The most likely plan is to start Sarah on Tykerb right away and also restart chemo (Xeloda) as soon as her nausea is not as much of an issue. Last week at the doc's office she had to stay to get fluids and extra steroids - she didn't realize that she was dehydrated and it really helped to get the fluids, plus her cortisol replacement steroid dose was also too low (probably was making her fatigue and headaches worse). This Thurs her onc will make the call on starting chemo and I think it's looking good. Her radiation onc wants to start a 3 week course of radiation to her pituitary on around 8 Feb. That'll be close to home so hopefully not too hard to manage and surprisingly he said it should not kill off her normal pituitary tissue, so there's a good chance that some pituitary function will remain.

Sarah is still pretty weak from the surgery ordeal but definitely improving, and now we're more anxious about the lymph node tumors that have been steadily growing - we need to turn that around and shrink them back down with systemic treatment as soon as possible.

20 Jan Update

Quick update on Sarah - she's continuing to feel better at home now. Headaches and nausea still there but they seem to be declining. Now we've got appointments with her onc and radiation onc this week and next week to work on the plans for treatment moving forward. She also still needs to go back to the ENT to get the rest of the packing removed from her nasal cavities. Yesterday only the splints were removed, which did allow her to breathe a bit more freely.

18 Jan - Sarah Home

Sarah felt well enough to leave the hospital today and is spending her first night home since the surgery! I think being home is making her feel even better. It is still very possible that she'll get a few headaches here, but we've got pain meds that should help with that. Tomorrow she'll go back to the ENT doc's office to get the splints and packing removed from her nose, which she can't wait to do (she'll be able to breathe again!). Then she'll go back on Coumadin by the end of the week and next week we'll consult with docs on when to start radiation as well as chemo (sigh). Out of the frying pan in to the fire - but she's ready to do whatever is necessary. Apparently it takes a while for the pituitary function to stabilize at new levels, so at some point in the next two weeks she'll also see the endocrinologist and determine if the hormone replacement levels need to be adjusted. But for now, we're just glad to have her back home.

17 Jan - Update

Sarah felt so much better after yesterday evening that she was almost discharged today, but then the headache and nausea came back around noon. She felt better again by the evening, so we're hoping she can come home tomorrow. As long as we can get strong enough pain med prescriptions and there's reason to believe that the headaches will be less and less frequent and intense, then I think she'll be comfortable leaving the hospital. Except for the headaches and nausea, Sarah seems to be healing up and recovering well from the surgery.

16 Jan - Splitting Headache

Well, Sarah spent most of the day with a splitting headache and nausea. Even pain meds didn't seem to control it and she just wanted to lay in bed without moving at all. It might be related to either over or under pressure of spinal fluid but we're not sure -- we constantly monitored for any suspicious fluid draining from her nose, but thankfully there was none. And, near the end of the day it suddenly started to ease up and Sarah was able to talk again and even eat some dinner. We're hoping this trend continues and she doesn't get another headache like that! Otherwise, she is doing better - we removed her "gauze mustache" this morning and her nose has hardly been bleeding.

15 Jan - A Bit Better

Sarah's doing better today and making steady progress on recovering. She was more lively today and was able to stay awake for some stretches of time. Her spinal drain was removed this afternoon so now she's not hooked up to anything. She started getting up and independently walking to the bathroom and back as well. Still not eating well yet but we're working on that. I went home last night and on my way back today I brought her mail and a cute stuffed animal that Ben sent along for her. :) Thank you for all the love and encouragement headed our way!

14 Jan Sarah out of ICU

Sarah was doing well enough today to get moved out of Intensive Care into a regular hospital room. Although she is still constantly drowsy (which according to the docs is normal), she is not "hooked up" to anything except her epidural drain. She can get up and go to the bathroom, drink and eat - although she's not eating much yet. The biggest challenge for her now in the near term is waiting out the discomfort of the nose incisions as they heal. She says her head feels "heavy" and she has trouble finding a comfortable position in the hospital bed. Still to come in the hospital is removing the drain and also removing the splits/plugs in her nose. I think it's still going to be a while before she can go home again.

13 Jan - Update

Spending 2nd night with Sarah in the ICU. She's doing very well according to the docs. However, she's still really worn out from the surgery and is spending most of her time sleeping. The staff got her to get out of bed and sit in her chair for a while (which she was not excited about at all). That is supposed to keep fluid from building up in your lungs and keep you from getting bed sores. She managed it fine but it made her throw up once - apparently that also is not uncommon for the 1st time out of bed after surgery like this.

She's managing well by taking mild pain meds on and off, but we're keeping up the anti-nausea drugs to keep her stomach settled as best we can. After a good night's rest, I'm hoping she continues the upward trend tomorrow.

12 Jan - Surgery Done

Posting from the hospital - Sarah came out of her pituitary surgery this morning and all went fine. She's still woozy but hanging in there, and we're waiting for her to be transferred to a hospital room (ICU for a day or two is standard). Although the surgeon was able to remove all of the tumor, the pathology did show that it was a met, which is scary. But, it has been there for over two years and seems to have grown & shrunk rather than growing aggressively and spreading. It is our hope that due to that and with the help of some follow-up radiation treatment to the pituitary it will hopefully not return. The next open question is how Sarah's pituitary will be functioning after the surgery. The next day or two should show that, and the surgeon does not think that this surgery will degrade pituitary function because of how well it went. It's even possible that some function will return as pressure on the pituitary is relieved.

I'm so thankful that this went as well as it did - thank you to all for the prayers and well-wishes! And a shout-out to my parents and our friends who always help take care of Ben and Sam in times like this!

I know Sarah will be very relieved to put this behind her once she has recovered. And I know she wants to press-on and start chemo, despite the side effects that come with it, so that she can fight back the lymph node tumors that have been gaining ground at her neck and abdomen. The Faslodex treatment she's been doing since taking a break from chemo just wasn't effective and we need to get back to something that is more likely to shrink those tumors.

3 Jan - Happy New Year!

Happy New Year to everyone! We celebrated Christmas here in Chicago with just us - intimate family setting. Sarah had quite a few doctor's appointments but we managed to make it out on a 5 day trip to New Orleans to visit Sarah's family over New Years Eve. Everyone had a great time on the trip and now we're back in the frosty tundra of Chicago and gearing up for Sarah's surgery on 12 Jan. We did go see the breast cancer specialist at University of Chicago last week before heading out, but the she did not have any significantly different new recommendations or insights into Sarah's cancer and treatment plans. Based on the discussion, we might talk to Sarah's current onc at trying Tykerb.
Well, first we need to get through this surgery and then move back in to systemic treatment mode. One step at a time. In the mean time Sarah's comfortable and has her appetite back, which we're thankful for.